COLUMBUS, OHIO – As lawmakers are finishing up their legislative session, they continue to think about 71,850 Ohioans who will hear the words “you have cancer” this year. The American Cancer Society Cancer Action Network (ACS CAN) and their coalition partners commend the legislature for passing and Gov. Mike DeWine for signing the Rare Disease Advisory Council legislation into law.
The Ohio Rare Disease Advisory Council will be comprised of qualified professionals, patients, and caregivers living with rare diseases. It will serve to educate medical professionals, government agencies, and the public about rare diseases as an essential public health issue and advise on new treatments for many rare diseases.
Ohioans who face a rare disease often face unique challenges, including delays in obtaining a diagnosis, misdiagnosis, shortages of medical specialists who can provide treatment, lack of treatment, absence of access to a knowledge base that ensures the most efficient and effective therapies, and higher than average treatment costs.
Unfortunately, rare diseases also affect our youngest Ohioans. All childhood cancers are considered rare, and while mortality rates have been decreasing, the overall incidence of childhood cancer has been slowly increasing since 1975. Other cancers that are considered rare include brain, pancreatic, ovarian, thyroid and stomach cancers. Other “common” rare conditions include cerebral palsy, cystic fibrosis, multiple sclerosis, narcolepsy, sickle cell, several types of immune disorders and 7,000 other known diseases.
It is expected that 1 in 10 Americans will be diagnosed with some form of a rare disease during their lifetime. Even with current advancements, 95% of rare diseases do not have treatment. Ohio must stay at the forefront of treatment options and guidance.
ACS CAN and their coalition partners praise the legislature for passing and the governor for signing this legislation in these uncertain times to reduce suffering and death for those facing rare diseases in our state.
About ACS CAN
The American Cancer Society Cancer Action Network (ACS CAN) is making cancer a top priority for public officials and candidates at the federal, state and local levels. ACS CAN empowers advocates across the country to make their voices heard and influence evidence-based public policy change as well as legislative and regulatory solutions that will reduce the cancer burden. As the American Cancer Society’s nonprofit, nonpartisan advocacy affiliate, ACS CAN is critical to the fight for a world without cancer. For more information, visit www.fightcancer.org.